Duchenne MD patients and caregivers! Your voice is needed right now. More than ever.
A nonprofit that wants to impose a mathematical formula on who can access lifesaving treatments is taking aim at the Duchenne community. We can’t let them do that.
The Institute for Clinical and Economic Review (ICER) recently released their preliminary Draft Evidence report for Duchenne therapies. This report isn’t an independent review. It is a document of danger. It takes a direct aim at the most vulnerable patients, their families and loved ones. We are calling on everyone in the Duchenne community to make their voices heard. This webinar will show you how.
We will be talking live with Dr. William S. Smith, a Visiting Fellow in the Life Sciences at the Pioneer Institute — a public policy research think tank. Dr. Smith is going to walk us through who ICER is and why they matter. This is how we fight back.
We’re taking just 30 minutes to show you how to share your story and tell the truth to an organization that describes itself as the “nation’s independent watchdog on drug pricing.”
Here’s some of what you’ll learn:
- For Your Consideration — An overview of the Draft Evidence Report and what we believe is missing from the equation — hint: actual patient voices.
- Submitting a Comment — How to submit a comment/story to the ICER team in the appropriate format and deadline
- Speaking to ICER — You’ll hear from a patient who spoke publicly at an ICER meeting and learn how to prepare
- Talking to the Media — How to engage with national or your local media around these important issues
Bring Your Questions — we will save 10-15 minutes at the end of the presentation to answer them!